Friday, July 12, 2013

Two Women and What They Did

We all slumped into our seats. Early morning classes are loved by no one. The professor strode in with a canister under his arm. There was a slight buzz, it wasn't excited anticipation that we were going to see a movie, it was mutual relief that we'd be able to nap for a half hour or so. We didn't nap.

The movie was about syndromes. On screen a man in a white coat holding a pointer would talk about a particular syndrome and then another man, also in a white coat, would bring into view a naked person with that particular syndrome. Then, while talking, the pointer would point to various body parts as he discussed how the syndrome evidenced itself on the body of the naked person standing, looking at the camera with terror filled eyes.

Everyone seemed to think it was part of the natural order of things, they are the exhibits, we are the exhibitors; they the objects, we the objectifiers. The film disturbed me then, it's memory disturbs me now.

And this is was I thought about on Wednesday.

Joe and I were headed over to Ryerson University where I was going to meet up with a team of people who were going to present at the Disability Studies Intensive Summer Program. We arrived, went upstairs and then found the others waiting outside the room. Once we were able to get in, several of us chatted while the techie in the group worked with someone from Ryerson to get everything up and working. We all laughed a lot as we talked. It was a good way to get over nerves.

I had the easiest part. I was only doing a few minutes introduction, putting our presentation in context, and then the others would take over. I'd come back in for the question time at the end. After I was done, I rolled back to the back of the room and watched the presentation unfold. After about a half hour of talking the podium was handed over two women with disabilities who got up to demonstrate what was done and to talk a bit about its impact.

The subject had been the research that had been done to show the Advocates Against Abuse program had be successful. The program had set out to teach people with disabilities to teach people with disabilities abuse prevention skills. It had begun about 18 months ago and in that time, people with disabilities who had been interviewed and selected for jobs as trainers, had risen to the challenge, stepping by self doubt, and become excellent trainers. The research showed that those who attended learned what was being taught, but it also showed that they related to trainers with disabilities in a different way - there comments indicated that the fact that the trainers had disabilities made them BETTER trainers.

It's been exciting work and we are now at the point of presenting about that work. A few conferences in and the call came in from Ryerson's Disability Studies Program. One of the professors there had consulted with the team on the research design and therefore was aware of what was done. So, there I sat, listening and enjoying the presentation. And then something amazing happened. Two women with disabilities got up to the front of the room and began to teach university students. Many of the student were in the Graduate Studies program, all of them took notes.

It took a while for what I was seeing with my eyes to be seen by my mind and my heart. Here, in front of me, in a university, two people with disabilities lead the discussion - they weren't the subject of discussion. Two people with disabilities demonstrated how respectful teaching was done.

I thought about those people who were forced to stand naked in front of a camera, those who suffered the indignity of a pointer pointing at their bodies, those who looked at us beyond the camera with eyes that asked how we could sit and watch their abuse with academic calm. Nothing will ever apoligize enough to those men and women. But the moment that two self advocates got up in a university class to direct learning, to deliver content, to speak as experts, it was clear that something huge had happened.

The voice that had been denied those on film, spoke out loudly and clearly now. I imagine, because it comforts me to do so, those people, stripped naked and subjugated to the camera's eye, standing in the back of that room and seeing a miracle, something they wouldn't have suspected ... two women shattering the every myth that had made it possible for them to be at the end of the pointer.

5 comments:

I too can see the folks standing in the back and watching how it should have been done all along! Your words painted a very vivid picture to me this morning...thank you for sharing two memories, one old one new.

This sure helps re-define the sense of "authority" and who is qualified to claim it!

(Your anecdote about the film immediately conjured up the years I was an in- and out-patient of a "crippled children's hospital," having surgery for scoliosis. Xrays were OK, but I was 15, 16, 17 at the time and we were also requested to put on uncomfortable diaper sorts of things, and nothing else, and be photographed - for a record of our curves our files? Did I, embarrassed enough already as a "deformed" 16-year-old girl, end up in a textbook somewhere, with or without that black thing across my eyes? Dignity sure didn't figure in the equation, or consent or explanation or any of that)

What a beautiful piece, thank you. I hate the "stand back and objectify" approach. I have a rare genetic syndrome that most doctor's have never heard of, let alone seen. They proceed to drag students in and talk about me as though I'm not there, as though I have nothing to add by telling them about my condition in my own words. It's amazing to me that they feel qualified to use me as a teaching aid when ten minutes before, they themselves had never heard of my condition. They read from textbooks that are so stark and inhuman, they teach about the condition, not the people that live it. I love it when those same students come to find me by themselves, without the older Consultants and their out of date approaches. They come to hear the human side of my disability. I'm a patient expert, I can use the correct terminology and teach them as any lecturer would...but I do it in a way that makes them see me as a person, not a syndrome. I show them that I'm happy, I'm silly, I can laugh at my problems...they see me, not a body with labels to inspect and recite. They remember me and therefore retain the knowledge I imparted far better than they do when it is presented as cold, hard medical abnormality. It reassures me that they'll actually remember me, recognise parts of me in someone else, diagnose them early and save them from the pain I've felt. When they have no emotional connection, they are less likely to remember what it was that was wrong about me, the visual signs, or how to diagnose it.

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Disability Pride

Dedication

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.